Long shot but does anyone have a child with strabismus? (squint in their eye)

[IsItMe24]

Just posting on the off chance anyone has experience with this.
My DS was born with a squint in his right eye (so his eye turns inward) which as a result is affecting his vision. He’s autistic so has some sensory issues and won’t tolerate their ‘treatment options’ which have been glasses and eye patches. He’ll just relentlessly take them off. Essentially they’re trying to cover his good eye to make him use the other eye but he has no understanding of this, so quite frankly I understand why he’s distressed when you’re covering the only eye he can see out of properly! He’s now 4 and we’re no further along progress wise. But they’re said they’re the only treatment options available so if he won’t tolerate it then basically he could lose his vision. I just feel this is really unfair as it’s not his fault! So I’m just hoping someone else has some knowledge around this. I’m been trying to push for surgery to correct the squint but initially they said they won’t do that until all other options have been tried first. They then told me they couldn’t do surgery until he’s older as he won’t sit still long enough for them to get proper measurements of his eyes. But today they told me that surgery won’t change his eyesight and described it as more of a cosmetic procedure that I can look into when he’s older if I wanted. But given that the surgery would correct his eye so that it’s straight, surely this would mean his ability to use it is greater than now and therefore this may decrease the likelihood of his vision getting worse?!! Not sure if it’s worth trying to see if I can afford a private consultation just for a second opinion

In our case, the opthalmologist was quite strict and said our son had to use his glasses (and then also his patch) even if he didn't want to, as otherwise he would end up essentially blind in one eye. He was two at the time and obviously not very impressed.
So I had to keep putting his glasses back on his face, he got used to them after a few days once I think he realised they actually helped him see better. He didn't take to the sticky patches at all but would accept the cloth ones on his glasses. So yes, it was a bit of a struggle at the beginning and I also didn't think it would work, but we really just had to persevere a bit until he got used to it all properly.
Could you perhaps reward your son in some way for wearing his glasses or patch (you've probably already tried)?

In my daughter's case, they wouldn't operate until her eyesight had stabilised which was around age 5.

My son didn't have a visible squint but had one very lazy eye with worse vision than the other one. luckily he tolerated patches but we were told that there were 3 treatment options (in order of preference):

Patch that sticks over the eye
Fabric patch worn on glasses
Eye drops (atropine?) 2 x weekly that blur the vsion in the good eye

Have they suggested drops at all OP? It would proably be a pain to get ghem in, but at least he can't then take them off like a patch.

There is research to show that the atropine eye drops are as effective as patching unless the amblyopia(lazy eye) is very severe however some Orthoptists and ophthalmologists are less keen on using atropine and will promote patching first. Atropine is very good in children who will not keep a patch on without being tied down and clearly you can’t do that. Atropine blurs close vision a lot as it prevents the lens inside the eye from focussing for near and has much less effect on distance vision . If the child has a squint it is easy enough to see if the atropine is working because the squint will swap to the other eye some of the time because the other eye is being blurred enough by the drops. The other key point is to put the drops in in the morning as the blurring effect wears off much more quickly than the dilated pupil so you don’t want the child to be sleeping when the atropine is having maximum effect

I think I will try the atropine and give the patches a go when he’s a bit older if they don’t work and hope he can tolerate them a bit better. Right now I absolutely can’t think of anything that will persuade him to keep it on due to his understanding. They did say they’ve got up to age 7 before the vision can no longer be improved regardless of treatment? Unless I’ve misinterpreted that. His squint eye I would say is pretty bad in terms of how often it turns which is far more often than when it’s straight (but professionally I don’t know what counts as severe?)

@IsItMe24 , it sounds like atropine will be a good option for him. Improving the vision by patching or atropine is more difficult the older a child gets as the visual system matures, and is considered to be complete around 7-8. If the squint is sometimes seen in the other eye that would normally suggest that the vision in the weaker eye isn’t that reduced and often as vision improves with the patching/atropine you will see the squint swapping to the other eye more frequently. Amblyopia(lazy eye) is a reduction in vision due to the visual development of an eye being disrupted, sometimes people incorrectly use the term lazy eye to refer to a squint which is what can cause confusion. A squint can cause amblyopia but there are other causes including ptosis mentioned by another poster. Squint surgery is to straighten the position of the eye and does not improve the vision. Surgery is described as functional if the eyes are able to work together once the eye is straightened or non functional if there is no binocular vision , non functional surgery is sometimes referred to as cosmetic. If you don’t have binocular vision it is harder to judge depth and distance and you can simulate what this is like by closing one eye and it is more difficult when things are moving faster and for example catching a ball is much harder. If you have never had binocular vision you do adjust to some extent

You may well have had helpful answers already, I haven’t read the whole thread. But my oldest had surgery at 2.5 yrs and a second surgery at 5yrs old. The second surgery plus one final round of patching has made it the best it’ll ever be. We tried patching and glasses early on and he wouldn’t keep them on. Now going through the process again with my toddler.

surgery was done to correct his squint which would help his eye sight and touch wood his eye sight is much better now and should soon be discharged. We are under the Evelina in London.

Yes and I had them surgically sorted. Quick simple operation and they are fobbing you off - go private as they will sort him out properly and you also don’t need to worry about all the hanging around in hospital they do which will stress him out and they are much better at dealing with life with additional needs and will just get ether surgery over and done with and you out of hospital as soon as you can

If you don’t patch they can lose the sight in the weak eye. Yea it’s hard and horrible but you have to adult up and do the patching. We used to only allow screen time when patches were on and bought the really sparkly glitter patches which helped a little, but basically this is on you. And yes I have been there.

DD had a squint in one eye (turned in) from 3ish until it was corrected with surgery aged I think 5ish. Hers was caused by being long sighted, and wearing glasses mostly kept it in check so it was never patched - it sounds like your son’s is more complex if his eye also occasionally turns out.

She seems to have binocular vision and plays sports to a decent level now!

Thank you @BellaNutella88 before your post the consensus was that surgery was a cosmetic procedure and I needed to persevere with either patching or eye drops. But now I see more people have had surgery done. I was always led to believe that they’d try glasses, patching and then surgery if that didn’t work. It was only at my last appointment when they said they wouldn’t do surgery. I understand surgery won’t correct vision but my thinking was surely if his eyes were straight he’d have more chance of being able to see properly?! As they tell me the purpose of patching etc is so he uses that eye more, essentially strengthening it so that it is straight. So I wanted to know whether I was being fobbed off. If they’d told me that surgery wasn’t an option/wouldn’t help from the beginning (he’s been under ophthalmology since about 6 months old) then I would’ve been fine. It’s the change that has confused me. So I think I will need to go private at least for a second opinion.

@IsItMe24 if you see someone privately make sure they are a specialist paediatric ophthalmologist. It really isn’t an either/or situation the patching and surgery have different treatment aims and surgery can be either “cosmetic” or have a functional benefit depending on the type of squint

Thank you, I don’t know where to begin with finding a private ophthalmologist tbf but I feel I need to just for peace of mind.
As I said if I’d been given the same information at each appointment I’d feel more reassured, it’s the sudden change in only just being told that surgery that would not be beneficial and isn’t on the table that has me doubting. As I don’t know how they’ve only just come to that conclusion now when they don’t even do anything with him to test his eyes. He doesn’t stay still so they haven’t been able to examine him and just keep saying to come back in 3 months. I’m not saying they’re wrong, but then the other people I’ve seen previously have given me false information so I have no clue what to think. Or maybe not false, but definitely has not been explained properly. And I’m 100% sure that I’ve never been told before that they won’t do surgery or that it won’t help. I do see a different person each time which maybe doesn’t help

@IsItMe24 you can look at Spire healthcare or Nuffield and find consultants on there. If you want to pm me where you are located and I can give you some pointers. Unfortunately as they haven’t been able to examine him this makes things more tricky as they need accurate measurements of the squint for surgery and to know whether they are aiming for a cosmetic( hate that word) or functional result. If it’s cosmetic the aim is to leave the eye turning in very slightly as there is the risk of the eye drifting out in the longer term. If it is functional they want to get the eye straight so binocular vision can kick in. The amount of muscle adjustment in millimetres is dictated by the size of the squint

I noticed my DS intermittent inward squint in his left eye when he was 3. From then, he had glasses and an eye patch on the right eye to improve the vision in his left eye. He had appointments every few months at the hospital to check his prescription and review the patching treatment. The vision in his left eye improved and is stable. So patching was to improve his vision in the left eye. When the doctors were happy with that, they offered surgery as he still has a severe squint in his left eye at times. At this point he was nearly 6. We have the surgery on 5th January 2026, and he will nealry be 7. The surgery is purely cosmetic and won't change his vision. His eye will still squint without glasses on and less, or hopefully never with them on after surgery. I am worried about it all, but from others in similar situations, it seems to be worth it. He is getting it all on the NHS, but the consultant also works for a private hospital and he has a good reputation.

My son had this. His was successfully treated eith glasses and a patch. We used various story books and cartoons of pirates to get but in for the patch. We had family members who wore glasses so this helped too. My son is not neuro diverse (if that term is correct)

my brother had this too, born late 60s so z different time. I have no idea what treatment options there were when he was a child. I know he never worse glasses or a patch as a child. He has surgery (privately) for his eye. As an adult, he does wear glasses.

My dad had surgery as a child in the 60s. They had tried patching and glasses but he refused to wear them and kept trying to break them (the old school milk bottle like NHS glasses!)

He is mid 60s now you can tell when he's tired as he's eyes don't always move as you would expect. His opthalmologist has praised the surgeon he had as a kid as his vision is no worse than you would expect for the average person of his age. He managed without glasses for about 5-10 year when I was a child after I broke them as a toddler and they couldn't afford to replace them and his depth perception adjusted.

My father in law has practically no vision in one eye for other reasons. He has plain glass on that side of his glasses as it's such a high prescription and his brain has adapted to only viewing through his good eye. To the best of my knowledge the only time this has caused issues was when he had cataracts. The cataracts in the bad eye was operated on first but then they said he couldn't have the second one done because he had an eye without a cataract. His opticians wrote to the GP saying that eye doesn't have sufficient vision and they booked him the surgery.

I don't have a squint but my eyes don't work together and this causes me to have double vision. I was told as a child I couldn't have prism lens as my eyes would get reliant on them and it would make them worse. As it happens having the prism lens have improved my double vision and now I only have to wear my glasses when tired or stressed. I very rarely get tension headaches, my migraines have reduced and I rarely feel my eyes struggling to stay together. These all plagued my life from 14 to 21 when I got my prism lens. I wish I had got them earlier and asked about what the risks were, what the consequences of having the prisms, what the consequences of continuing as I was without my eyes working together. Adult me would ask different questions.

I would be asking for comparison of what you might expect with or without the surgery. What to expect with or without the patching and glasses and so on. Ask for a second opinion if you need. If you don't understand the rationale for a decision ask for further explanations. We all feel better about decision when we feel like are making informed decisions. It might have been the right decision for me to wait for the prisms but I don't feel that at the time I had the information to say that waiting over trying them at that moment in time.

We have had this with a dentist, one where they were recommending potentially capping one of my daughters teeth due to acid reflux. The second said that wouldn't be an option and it would need removing. The following visit said it would be an option but let's wait. 2 years later with regular fluoride treatment she had no further deterioration and needed neither, she's had a no drill filling just for extra protection.